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NAS88196

Hi, My name is Margaret, and I am a new member.

I was only diagnosed aged 59 during my degree, and it was a shock but a relief too, as I finally understood why I struggled so much.

I have four beautiful daughters, and two sisters older than me who have since been diagnosed with Autism too. It hasn't been easy, but now at least I know why I can't make or keep friends, and why I am always a square peg in every round hole. 

I have spent most of my life caring for my youngest daughter, who has Crohn's, and running community projects in Sussex. When my daughter got really ill, we moved to London to be near her medical team, which I found really traumatic. I have been here 11 years now and still feel totally lost. I hardly ever go out and get lost when I do, and I find the noise and traffic so hard to deal with.

It has taken a long time to get used to being diagnosed, and my doctor refused to accept it because it was done at the university. I have never had any support or help of any kind, so I have just been adapting to this new understanding by myself.

Now I am ok with it, but having retired last year, I am finding it hard to figure out how to live such an aimless life. I have always been either caring or running busy projects, but my daughter is now in University herself in Scotland, and I am starting my life again. So new understanding. New city, really, new lifestyle and truthfully its all a bit much. I stay indoors day after day and watch TV, but I don't want this to be the rest of my life.

Is there anyone else on here who has had such a huge change and has adapted to it? I would welcome advice. My other children no longer visit as they have taken the diagnosis very hard, fearing I have passed it on to them and their children. 

I used to be really ambitious and planned to be a solicitor, but now I just watch TV. I am doing some courses online to help myself get back to life, but I find living in a city a nightmare after coming from a small seaside town. 

I am a bit excited about the possibilities of the future without caring or small children, but daunted at the big-ness of it all. Would love to hear from others who have been late diagnosed, or had to face big challenges in life, and have made it through. Thank you

  • in reply to NAS88196

    Hi Margaret

    I totally get that!!

    Responding can feel overwhelming sometimes.

    No need to apologise at all  I’m really glad you replied.

    What you wrote makes a lot of sense to me. I recognise that feeling of slowly understanding how others see us, and learning bit by bit.

    Thank you for reaching out.

    Warm wishes 

    Relaxed️

  • Another fully paid-up member of the "Latelings" as some of us understand very late diagnosis here on the forum.

    The wisdom of this image has been a comfort to me as I learn to;

    • absorb what my diagnosis means to me (patiently as possible),
    • bumpily weather the re-emergence phase,
    • experiment with more neurodivergent-friendly adaptions / reasonable adjustments (to help me better thrive in a wider range of settings - as I approach the tentative stepping stones towards my next chapter in life).

  • in reply to leveller61

    Dear Leveller

    Thank you so much. I am sorry for the delay but I have struggled a bit wirh how to replyLaughing

    I grew up in a village and so prefer the quieter and slower pace of life. London is like a roundabout!

    a really lovely welcome and so good to know I am not the only latecomer!

    warmest wishesSlight smile

  • in reply to Lonehare12

    Dear Lonehare12

    so sorry I couldn’t figure out how to answer until nowBlush

    Thank you for your kind message. It’s good to know I am not the only one feeling this. 

    Day by day I am learning about how others see me, and why they stay away. Something instinctively tells them I don’t understand the rules. 

    So little by little things get better

    Warmest wishesSlight smile

  • Hi Margaret and welcome. I am a fellow diagnosed-at-59er and know that it takes a lot of adjustment.

    Hunkering down and resting is OK and may have been what you needed after all that giving and caring for others. I can imagine London is quite an overwhelming sensory experience too. I live in a village and I appreciate the quiet. Maybe getting back to a quieter place may prove part of your journey...

    Your being a bit excited is a sign you are getting ready for what's next - your time to explore your own needs. 

    I am recovering from deep autistic burnout and know that feeling of being daunted by big stuff. What is working for me is turning that into lots of successive small experiments to see what works for me and what doesn't. Keep what works and add to it. To borrow a phrase from an advert, 'incremental becomes monumental'.

    Early days, but it seems to be helping me. My experiments have been things like 'go to nearest cafe', 'say hello to other dog walkers', 'listen to autism podcast', 'have a nap', etc. My natural curiosity and playfulness are coming back through this. Having a dog has opened a new set of experiences for me.

    I am sorry to read that you don't currenttly have the support and presence of your other daughters. I hope that over time they come back to you and recognise that you have given them life, as well as understanding thar autism isn't a fault or flaw, but a neurodifference with its own strengths. 

    You are whole and enough, and worthy of love and compassion from yourself and others. I wish you every success and please keep us posted on how it's going.

  • Hello and welcome Margaret. I’m extremely sorry to hear about your children no longer visiting. I can’t imagine how hard that must be in addition to moving from a seaside town to a city, sounds very overwhelming. I like the fact you are excited about the future and that resonates with me as I’m late diagnosed recently too. I think online courses are a great positive distraction. I am currently doing my level 1 & 2 in BSL. Welcome to the ‘square peg’ club. I hope you find this forum helpful, I certainly have. Enjoy. 

  • Hi Margaret 

    Thank you for sharing yourself so openly. I’m sorry to hear that your children no longer visit you, that must hurt so much.

    Lots of parts of your story resonate with me. I am late diagnosed with Audhd and only found out because my therapist suggested ADHD as a possibility. I started therapy a couple of years ago partly because my son had left home and I felt like I didn’t have a role in life anymore, amongst other things.

    I think my challenges are realising my close relationships mum/husband have been pretty toxic and one sided. I have very little contact with my mum now and while my husband and I live in the same house we are officially separated. I haven’t had any really strong friendships throughout my life and I still struggle in this area. I feel very lonely at times. 

    Being in nature has really helped me. I live very close to woodland  and open spaces and I try to get out there when I can. I have also joined a autistic group where we meet monthly for walks and other  activities.

    Are there any opportunities to do some kind of volunteer work, something that you are interested in? I have just started helping out at Riding for the Disabled, being around the horses really helps regulate me and gives me a bit of purpose.

    NAS88196 said:
    am a bit excited about the possibilities of the future without caring or small children, but daunted at the big-ness of it all. Would love to hear from others who have been late diagnosed, or had to face big challenges in life, and have made it through

    This bit was so good to read and it made me think that there are lots of opportunities out there and to maybe feel excited too.

    Sending warm wishes your way.

    Blush